Salivary Gland Dysfunction

[Victoria]

Does anyone else have salivary and lacrimal gland dysfunction? My rheumatologist thinks I have Sjogren's but all of my autoimmune markers are negative and I don't respond to medication. I wake up at night and I'm so dry I'm unable to swallow. My mouth is so dry it feels like sandpaper and my teeth are all but destroyed. The lacrimal and salivary glands are controlled by the ANS so I'm confused about this issue. It certainly isn't one of my worst symptoms, but I'd like to know if anyone else is affected in this manner.

Thanks so much.

[HopeSprings]

I think I have salivary dysfunction too, but it is the opposite of dry mouth. All through the day I get sort of these squirts of liquid come through the glands that has an odd taste --kinda salty? It started with my first POTS crisis 5 years ago, so I assume it's related. I saw a mystery diagnosis episode about a woman with Sjogrens and the way they found it was through a lip biopsy. I think it's very painful though. Everything else is dry though, skin, hair and especially my eyes.

[Sarah4444]

I also have odd salivary gland behaviour, but more like Naomi's. If I am hungry or think about food I have noticed that saliva sometimes actually squirts out of my mouth if I open it. But I also have very dry skin and hair.

[Victoria]

I think I have salivary dysfunction too, but it is the opposite of dry mouth. All through the day I get sort of these squirts of liquid come through the glands that has an odd taste --kinda salty? It started with my first POTS crisis 5 years ago, so I assume it's related. I saw a mystery diagnosis episode about a woman with Sjogrens and the way they found it was through a lip biopsy. I think it's very painful though. Everything else is dry though, skin, hair and especially my eyes.

Naomi and Sarah,

Thank you for the info. I don't have the rapid onset of salivary gland excretion, but I used to ages ago. I also have very dry skin, hair and eyes. Looks like the cause may be a mystery, but its reassuring to know I'm not the only one here.

All the best.

[zaks27]

Hello! I have autoimmune problems and Sjogren's is one of them. Now mind you, I was told the only true diagnostic test for Sjogren's is a biopsy. I've never had that, but with my Rheumatoid Arthitis and pernicious anemia, the sicca I was experiencing was diagnosed as Sjogrens. My mother was also diagnosed with it when she was my age. Within 6 months, I went from a clear dental exam to TEN cavities. It was my ENT who put me on EVOXAC. It literally gives me saliva. Greatest drug out there for dry mouth. My dental exams aren't perfect--maybe one cavity every 6 months--but I can't really complain. BTW--I also have tried the Biotene mouth products--without much success. Ask your doc about the Evoxac or another one (available as a generic) is Salagen. Good luck! Susan

[Victoria]

Hi Susan,

I haven't had the lip biopsy either, and I don't really care to. Yikes! Sounds like your diagnosis is definitely in the bag with RH and pernicious anemia. I'm sorry you have so many health issues.

My rheumy prescribed Evoxac, but our insurance doesn't cover it well and it would cost me $75 out-of-pocket per month. Darnit, why does everything have to boil down to money? I am taking the generic for Salagen, but it just doesn't do much for me. My CPAP also dries out my mouth at night even though it has a humidifier on it. Maybe I should check again and see if they've come out with a generic for Evoxac.

Thanks for replying, I really appreciate hearing from you.

[zaks27]

Hey Victoria!

I'm so sorry the generic Salagen isn't working for you. I totally agree with the cost of Evoxac, my insurance has a $69 copay for me:=( Ha--the Enbrel for the RA is $650/mo out of pocket and $850/mo while in my donut hole! I had to stop taking it last month as we're a tad over the qualifing income for assistance. Don't know what my Rheumatologist is going to say about it. BTW--I keep a bottle of water and sugarfree mints next to me at night. Sometimes I'm a mouth breather and my mouth is soooo dry. My dentist said the sugarfree candies are fine, and I haven't had to deal with extra caries because of them. My dentist also gives me a Rx for 1.1% topical fluoride toothpaste. We don't have fluoridated water in our area and I've found I got most of my caries before I began using the toothpaste. One more thing--WHAT you don't want a lip biopsy???? Geesh, I can't imagine why... Hang in there. Susan

[Victoria]

Zoiks, Susan! That's a boatload of money for the Enbrel. I'm so sorry you had to stop taking it. :-(

I've been going to the U of I dentistry and they recommended I use "Saliva Sure" lozenges (Scandinavian Formulas) and they help quite a bit. I get them from the dental pharmacy, but the problem is I run out of them pretty quickly. $7.00 for a purse sized box of 90. I think they work much better than the sugar free candies because they contain Xylitol and stimulate saliva. scandinavianformulas.com

Yeah, I'm also a mouth breather also, thus the full face mask with my CPAP. Ugh. I've had quite a few caries over the past several years despite staying sugar free. I'm going to ask about an Rx for the fluoride toothpaste, thanks for the suggestion.

Lol about your lip biopsy comment! Did you get in line for one? I have plugs in my eyes, but that's as far as I was willing to go. You hang in there, too and keep that mouth moist!

Victoria